Monday, August 29, 2011

How to Recover from a Rare Disease in 8 Months or Less

I thought I would do a little recap of the whole saga here, as at my grandmother's wake the otehr day, all I heard was how good I looked.  Granted, I was in a funeral home, so I guess not being in the casket can be construed as "looking good."  Some of this may be a sort of repeat for some of you loyal readers.  think of it as one of those "Previously on the Matt Dursin Show..." sort of things.
As 2011 began, I was driving cross-country with my friend Brom, who was relocating to L.A. to pursue an acting career (We detailed the trip here, for you late-comers.)  Despite the fact that I ate like Andre the Giant during the trip, I think I can safely say that I began 2011 in probably the best shape of my life.  Of course, I had never in my life been in very good shape, but still... Before the trip I was averaging 300 crunches a day and lots of push-ups and bike-rides and was staying away from fast-food and even drinking less beer (I know.  Shock!  I should have seen it as a sign that I wasn't feeling myself).  I returned to Boston at the beginning of Jabuary, ready to face a new year as an awesome individual.
Sometime around Valentine's Day, I caught a bad cold, and one day coughed up some really gross, purple-y stuff.  I didn't think this was a huge deal, for whatever reason, and once the cold cleared up and the coughing stopped, no more purple-y stuff came out, so life moved on.
March rolled around, and man, was I beat.  Just dead tired.  I stumbled through the first half of the month, and when Spring Break came, I actually took three days off from work to just sleep in.  That was unprecedented, but I figured it would help.  Not a bit.
Around March 15th, I looked grey and weak and my skin was like paper.  Also, my blood sugars had been running super-high, even though i wasn't eating anything different.  I thought maybe I got a bad batch of insulin, but even switching vials didn't do anything.  So, I attributed the ruun-down feeling to the high blood sugars and made an appointment with my endocrinologist.  She, unfortunately, couldn't see me for a couple of weeks, which was really annoying.  My primary care was similarly booked, even though I told them that, while it wasn't an emergency, I was feeling pretty bad.  I'm sorry, they said, but the soonest they could give me was the next week. 
Around this time, I paid a visit to my chiropractor (who I figured was about as good a source as anybody for a diagnosis at this point), and after a few tugs and pulls, he says my iron is low. I stop at CVS and buy some over-the-counter iron pills and figure I'll be good as new soon enough.
I was finally able to get in to see my primary care physician, and upon walking in the room and seeing me, he gave me the very helpful diagnosis of "You don't look very good."  To which I replied, "Well, fix me!"  Okay, I didn't, but in my head... Anyway, he took some blood and told me to get some rest and he would get back to me, but it's possible I was anemic (which would have gone along with the chiropractor's theory.  And he didn't even have to poke me with needles.)
That very night, I get a call from the lab people that not only was I anemic, but absurdly anemic.  Like, "How the hell are you still standing?" anemic.  It was so bad that they were sending an ambulance to take me to the emergency room.  I found this really strange and scary, since I had never been in an ambulance before.  When they arrived, they asked me all kinds of questions that i had no answer for, and I had questions that they didn't have any answers for, like, "why is this happening?" They said, "Well, you called us, didn't you?"  No, I most certainly did not.
After hours in the emergency room and several degrading tests on my body, that night began hospital stay #1, about a week's worth of blood transfusions, bone marrow biopsies , chest x-rays and CT scans while they tried to figure out what was wrong with me.  This is where I envision my doctors sitting in a room with a white board being scribbled on by Hugh Laurie, eliminating possibilities and placing bets on my life.  Still, the red blood count went back up, and I was released, since no one knew what the hell was going on anyway.

It was not to last, a few days later, just before my birthday, April Fool's Day, I was back.  Now, they were fairly certain I had Wegener's Vasculitis, a rare one that causes your body to produce way more anti-bodies than it needs to fight off infections that you don't really have.  This causes probs for your kidneys, which race to keep up, and lungs, which is where most infections go.  This time, no more marrow biopsies, thank God, because I thought that was the most painful I had ever experienced, until I got the chest tube put in.  Then, that became the most painful thing I had ever experienced.  And let's throw in one more tiny wrinkle: the bastards punctured my lung while putting the tube in and it collapsed, nearly killing me.  Of course, I had signed a waiver saying that sometimes weird things happen in hospitals, so I can't sue.  Also, my blood sugars were all over the place, to the point where I actually had to spend a day in tensive care so they could monitor me while they got them back to normal.  When they finally straightened all that out, the tube drained my lung and I was again sent home, feeling a little better and on a lot of drugs, most notably 80 mlg of Prednisone, which are steroids that are prescribed for almost anything from poison ivy to, apparently, Wegener's.
I lasted a week this time.  I even went back to work.  I was working a rare Saturday when I got extremely short of breath walking down the hall, and decided to call an ambulance.  Despite being somewhat embarrassed and pissed that I would most likely be admitted again, I think this was the right move.  Of course, I was admitted again, but not before they drained a giant bag of brown liquid from my lung.  This was obviously so insane that the doctor asked if he could take a picture of it.  I didn't care, but why would anyone want a picture of what amounted to brown lung-snot? 
This time, I got the full truckload; a thoracic surgery team, a rheumatologist, an infectious disease team, a nephrology team, a guy from the Joslin Diabetes Center to come over and adjust my insulin every day, and a bevy of nurses and technicians.  With this many people working the case, the damn well better know what's going on.  They finally did.  Knowing that my immune system was being suppressed by the steroids, and my badly infected lung (it basically looked like one of those geode rocks you can buy at the Museum of Science gift shop) would not heal on its own because of that, Dr. House came up with a revolutionary technique to use two chest tubes, one for in and one for out, and inject saline into my lung while I jostle around in my bed to shake up the lung gunk that wouldn't come out on its own.  This happened every six hours for a few days, and let me tell you, if you haven't felt the inside of your lung fill up with cold saline solution so much that you can actually taste it, you just haven't lived.
Still, the technique worked.  Basically, we were artifically doing what the body usually does naturally, when that body has a working immune system.  Actually kind of cool when you think of it.  So cool that i think I ended up in some medical journal somewhere, although probably as Patient X or something.  And so, on June 1st, I was released again.  This time, I had a visiting nurse coming every day, and was infusing myself with anti-biotics daily, and was told how to stave off infection (which they never actually said anything about before when they would let me go home.)  This was definitely scary, because I was very afraid I'd just get sent back yet again, but the visiting nurse, Cathy, was awesome, and she told me that I was much better off at home takig care of myself than at the germ-ridden hospital.  Apparently, she was right. 
In a couple days, it will be September 1st, and I have not been back.  I am working, riding my bike, the prednisone is down to 15, and I can walk down the hall without calling an ambulance.  All the tubes and needles are gone.  Cathy is, sadly, gone.  My appointments are farther apart.  The surgeries that I was supposed to have ended up being unnecessary.  I am starting to feel "normal" again.
What have we learned, besides that life can be like an episode of "House" sometimes?  That perseverance pays off?  That there are caring, nice people in the medical field, and tehre are dopes who will pierce your lung if they're not careful?
I don't know, man, but I will offer this piece of advice; if you start coughing up purple stuff, go immediately to your chiropractor.   

Friday, August 19, 2011

Judgment Day is Upon Me

Let me try to put this delicately.  On second thought...
This friend of mine is seeing this dude (or screwing, or whatever the Hell they are doing.)  She was at his apartment, and was kind of surprised to see that he had DVR'd the latest episode of Jersey Shore, and was very adamant about watching it ASAP.  I think part of the story is that he was a little high at the time, but he still DVR'd it.  Now, I've never met this dude, but when I heard this, I laughed at him, from a great distance, but I bet he heard me.  I laughed because I know no straight man who has ever watched, let alone records, Jersey Shore.
For the uninitiated, Wikipedia describes the show thusly: "The series follows the lives of eight housemates spending their summer in a summer share in Seaside Heights, New Jersey."  Of course, they spent a season in Miami, and apparently there will be a season in Italy.  Perhaps it will be in Jersey, Italy.  Nevertheless, it is the most popular show in the long history of MTV, surpassing Real World/Road Rules and even that one about the fat teenagers.  And yet, I know no one who actually watches it, mostly because I don't know any pre-teen girls.  I also don't know this dude, but apparently he watches it, too.
Part Two of this story is more personal.  Not long after my giggling, Jersey Shore revelation, my friend witnessed me watching (via Netflix Streaming) the X-Men animated series from the early-90's.  I had remembered liking this series during its hey-day, so I wanted to see if it still held up (and I honestly didn't watch a lot of its 5-year run).  It really doesn't hold up at all, but then, I am thirty-five.  I just don't really get what they were going for.  It was filled to the gills goofy lines and general silliness, but they killed off Morph in the first episode, I guess to illustrate that it was a "serious:" show.  Probably as serious as Jersey Shore, anyway.
Which brings me to the point of this whole rigamarole.  As she watched me relive my youth, my friend shook her head and said, "And you judged someone for watching Jersey Shore."  I defended myself by saying that it was pure nostalgia, and she made a slight retraction by pointing out that she knew what show I was watching after seeing just a few seconds, because she watched it back then, too.  Still, I was vexed.
I did judge that man for being a 30-something year-old who recorded Jersey Shore, and yet I was streaming a cartoon (and eating a grilled cheese while I watched it).  In fact, I watch a lot of cartoons, and eat a lot of grilled cheeses.  And I read comics and have a collection of Jokers.  If someone were to laugh at me, I would probably feel wronged and laugh back at whatever silly thing they do ("You drive a car in the city?  What a simp!")  The big question?  Is one worse than the other?  And who am I to judge, having consumed hours and hours of crap television in my lifetime?  It's true!  While I was dating my girlfriend, I used to watch General Hospital with her, and to be honest, Luke Spencer was totally my hero.  I mean, he used to go on actual adventures like some kind of modern-day Indiana Jones.  How could you not think that was cool?  But I digress...
I don't know even what the point is.  Maybe that we all have our "things."  Granted, I haven't watched X-Men since that day (mostly because I thought it was a bad show, not because I was embarrassed.), and I've never watched Jersey Shore.  But if I was a little younger, or dating someone who watched it, would I be a fan?  Well, no, because there's watching a show, and watching a show.  I'll watch re-runs of The Simpsons, but I watch Mad Men.  Maybe it's always weird when someone outside the core demographic watches anything.  Maybe it's because I remember MTV before it was so terrible.  Maybe this dude just gets a kick out of that "Guido" shit, and maybe I'm just a little too young at heart.  Maybe there's just too much damn TV in the first place.  I don't know the answer, but I do know that I did laugh at that guy, and yes, I know that saying about glass houses.  Honestly, I still find it funny that a grown man would DVR a show geared towards teenage girls.  So I guess I haven't learned my lesson.  What's the opposite of "Judge not lest ye be judged."?
Honestly, I feel there should be rules here.  Maybe we're not judged enough in today's society.  I mean, I'm not saying we should all be racist bigots, but I feel like when I was younger I got made fun of for just about everything I did.  True, liking any show is pretty harmless, but usually, when you give people an inch, they'll take a yard.  Maybe I've been to too many comic conventions and seen too many people dressed up as Chewbacca in public to make an accurate assessment, but we may be creating a generation of weirdos.  I know people who go to a yearly "writer's convention," only the writing they are referring to is actually slash fiction.  I think the next one will be called Orgy-Con 2012, and yet I can't even watch X-Men in my own house.  There's a problem here.  Should we just be allowed to do whatever we want?
I guess as long as we're not hurting each, right?  But when that day comes, will it be too late?

Friday, August 12, 2011

The Lighter Side

I've been writing about some serious stuff lately (well, maybe not Captain America, but lung gunk and whatnot.), so I thought I'd change it up a bit and give a little of the humorous side of a long hospital stay.  I'm going to tell you about my roommates.  Be warned, however, when it comes to hospitals, you leave your dignity at the door, so some of this may be rather low-brow.  Gotta be done.  Don't worry.  I won't use any names.  Well, maybe one.

Upon arrival, my room was occupied by an older, Hungarian man who apparently spoke very little English.  His daughter was able to translate for the doctors, but she didn't come by very often, so when they would do their rounds in the morning and ask how he was feeling, they did what most people do when someone doesn't understand what they are saying: they said it louder.  I realize it is a normal human reaction, but the guy wasn't deaf, he was Hungarian.  He didn't speak English.  He's not going to get it any easier if you say, "ARE YOU IN ANY PAIN?" as opposed to "Are you in any pain?". As a result, I knew everything that was up with this guy because they shouted at him every test and procedure he was going to have.  
 The best part came when they were going to take him for a X-ray, and he was... in disposed.  And he refused to get off the toilet to be taken for his X-ray.  They waited a little while, but the guy just wouldn't budge.  In a minor panic, the nurse used her personal cell phone to call the guy's daughter to explain to him that he had to get up and go.  She then had to hand the guy her personal cell-phone through the slightly open bathroom door so he could talk to his daughter.  Of course, he had not washed his hands before handling her phone.  I met a lot of nice, helpful and good people at the Beth Israel, but this girl was clearly an idiot.

When they thought I might have had pneumonia, they shipped him to another room and I had a day where I was all alone.  So, I lived it up, going so far as turning down the oppressive heat to cool the damn place off a bit.  All the nurses and techs who came in said they loved it because it was so cool in there.  We had a ball.

Then they brought in Money.

"Money" Johnson was brought in late on a Saturday night, and he had clearly been enjoying himself.  I liked keeping the curtain closed, so I didn't see what was going on, but based on what I heard, it seemed that Money had passed out in his home, and someone I believed to be a landlord or a neighbor with a key to his place brought him to the hospital.  I then heard them say good-bye to him and rush out of there like Scooby-doo running from a thief.  The nurse then brought Money a bucket for him to puke in, which he used extensively (and loudly) for the next several minutes.  He proceeded to yell over and over that he was cold and he needed a blanket, and another nurse turned the heat back up, so I went back to sweating my brains out in there.  Damn you, Money!

As the days went on, I alternated between feeling sorry for Money and being angry at him.  For one, I was able to deduce that this was not his first trip to the hospital, and heard several doctors ask him if he had ingested rubbing alcohol or nail polish remover, because they found some in his system.  He claimed a friend had given him a shot of vodka that "tasted kinda funny."  Of course, no one believed this, because as Dr. House says, "People lie."  Clearly, Money was (and is) an alcoholic, and rubbing alcohol was all he had handy that night.  He also claimed that he must have had a stroke while walking out of his apartment and someone found him in the hall, but the doctors informed him he was brought in by someone who said they found him in his apartment, probably in a pile of puke.  But that's conjecture.  So, in general, I don't feel a lot of sympathy for people who take up hospital beds because they can't lay off the rubbing alcohol.  I know it's a disease like anything else, but he was obviously a repeat offender and I just don't feel bad for people who seem intent on destroying themselves.  And how the hell do you drink rubbing alcohol anyway?

On the other hand, Money never received one visitor the entire time he was there.  He talked on the phone a little bit and watched some TV, but even the nurses and doctors seemed to pay him little mind.  And he never talked about missing work, so I'm not sure he had a job.  After a few days, they shipped him off to some rehab facility.  He's probably back on the street now, possibly still drinking funny-tasting vodka.  In that respect, I do feel slightly bad for him.  He seemed alone in this world, except for the bad friend who gave him the "vodka," and he seemed like the type of guy who could use a friend once in awhile.

From then on, I was mostly put in rooms where I was alone, which was really the way to go.  During my last stay, however, I saw the most roommates, most of them for only a day or two.  One guy had obviously had some sort of gastro-intestinal issue, because when the doctors asked him if he had, y'know, "had a movement," he said "No, but a lit a few good farts while I was in there."  The best part was, like any good comedian, he used that joke on a few different people, and it always got a reaction.  Unfortunately for me, I knew that he wasn't just coming up with it on the spot.  He was doing material.

The next roommate was a young man, who obviously came from wealth.  I know it's weird to say just based on over-hearing his conversation, but the fact that his parents visited and told him he could take the rest of the summer off and use their vacation home the whole time was a pretty good indication.  The curious thing about this kid was that he came in on a Friday, and by Saturday night had made enough of a stink to where the doctors allowed him to go home.  Mind you, this was his decision, and he came to it about 9:00 on Saturday night, so no pharmacy was open to get his prescription filled.  His parents, used to getting their way, asked the hospital to fill it, which they do not do.  Their policy is not to let folks walk out with drugs.  But the kid decided to grin and bear it and leave and get his script filled at the first opportunity because, as he put it, he "couldn't take another meal in this place."  I suppose I don't blame him entirely, but... Screw you, you whiney little bitch.  Have some sympathy for the folks who weren't given the choice.  yeah, no one likes to be in the hospital, but some of us have to be and we don't get access to Mom and dad's summer home when we get out.
They then brought in the coup de grace, Lee from Lawrence.  Lee apparently also had a gastro problem, although his seemed to stem from an earlier gastric-bypass surgery and a rather poor diet.  Lee was a talker, and had no problem telling me that he used to weigh 600 pounds, and was now down to a svelte 300.  Seems like Lee drank a lot, too, but was now having trouble keeping anything down.  So, while the doctors tried to figure out exactly what was wrong with him (besides the obvious), he was restricted to ice chips.  Lee begged and pleaded with the nurses, then yelled at them, then apologized, then yelled and apologized again, but to no avail.  Only ice chips.  He did seem to be placated by  afternoon soaps, which he claimed to only watch because of his girlfriend ("Girlfriend?" I thought. "He has a girlfriend?")  He was also very anxious to be in his bed and undisturbed by 9:00 on Monday to watch wrestling, only to then tell the nurses that he wasn't that into it and he just watched it because it was something he used to watch as a kid and he got a kick out of it.  Whatever, dude.  If it was just some show you watched, why are you spazzing out over missing it?  He even called this supposed girlfriend during the show so they could talk about it together.  He talked on the phone a lot, in fact.  Using the hospital phone.  The one that they charge about $95,000 a minute to use.  He's probably still there washing dishes to pay off his phone bill.

The oddest thing about this guy, though, was his apparent vanity.  Remember, he was 300 pounds of flesh that used to be 600, so he didn't exactly look like one of those professional wrestlers he was watching.  And yet, every morning he could not see or talk to anybody before brushing his teeth and taking a shower.  I guess that's good, but he never left that room all day, and no one ever came to visit him except the nurse who brought the ice chips.  Just who was he trying to impress exactly?  I mean, I guess there's personal pride, but at that point, just get better and get out of there was my goal.  Who cares if your hair isn't washed every day?  Yes, I did brush my teeth after meals and washed up in the morning, but it wasn't an obsession.  Maybe it was something his mom told him during one of their marathon, million-dollar phone sessions.

After a few days, I was discharged and left Lee there.  He was the only one I left behind, after going through seven (count 'em) roommates, plus a few stints where I had no roommate.  In retrospect, they served their purpose in my life, because as bad as I felt at times, some of these people were doing much worse.  And I'm not telling these stories to put them down or make fun of anyone, because these people were all suffering.  I'm really trying to give a little perspective.  In the end, we are all lucky in some way.  Even if it's to not be Money.

Monday, August 08, 2011

Back to reality

So, I'm back at work these days.  Even rode my bike to get here this morning (and there's a hill on St. Paul St. that's a real pisser for a guy with recovering lung, but i made it).  Oddly, for a guy who missed so much work, I have precious little to do here, but that's mostly due to construction around the building, not me being incapable of doing any work.  People here have told me that I'm looking better (one co-worker said that I looked "gray" back in March before everything hit the fan.  Yikes.)  I did push-ups today.  Not a lot of them, but enough to make me feel good.  Plus, the steroid side effects are slowly going away (acne in weird places, sleeplessness, getting ridiculously bloated).  I am now attempting to work off the gut I developed sitting around and eating for the last few months.  This is something I have never done in my life, so we'll see how that goes.  I suppose a couple weeks off the pizza and hot dogs is probably in order.  Crap.

Anywho, that's the physical stuff.  Nothing short of miraculous, eh?  Okay, I'm not bitter.  But when people say how crazy it was that all this stuff happened to me, I can only reply, "Yeah, it sucked."  No other way to describe it, really.  But I'm back.  I can take normal showers again.  I am riding my bike (thanks to my awesome friend Hides, who donated hers to the cause).  I have had a few beers.  I'm worried about my hair and money.  If I go on a bad date here and there, everything will pretty much be exactly as it was before all this.  Well, okay, I'll try to avoid the bad dates.

I guess I have a slightly different outlook on things, probably besides washing my hands more often.  It's inevitable.  Weeks spent virtually alone with nothing to do but think and watch fluids come out of your lung will do that to a guy.  In the end, I'm not sure I want a whole new outlook on life, though.  Maybe it's there, but I'm certainly not going to get all preachy about it like some character from Rent.  It happened, and like I tell people, it sucked, but other than "Go to the doctor if you're sick," I don't have a lot of sage wisdom to offer.    Oh, and if you do have to be hospitalized, and they offer pain medication, take it!  Don't be uncomfortable, for Christ's sake.  Those are the two most important things I can take away from this.

I wish I could say I came away from this having found Nirvana or something, but let's face it, I'm pretty much just glad I came out of it at all.  I do have a slightly better understanding of what's important (basically, health), so I probably will have a few less things to complain about for awhile.  But soon enough, I'm sure I'll go back to complaining about everything.  I'm sure I'll be the same son-of-a-bitch I always was.  Hopefully, that's good enough for everybody.

Tuesday, August 02, 2011

Without a Net

Today, I had my last scheduled appointment at Beth Israel for three months.  I was told my chest X-Ray looked great, the incision site has healed, and I could even go swimming if I wanted (and yeah, I want to.)  They actually used the technical term "Wow" when they saw how well I had healed up.  Doctors, eh?
So, that is that, for awhile.  I mean, I still have appointments with my rheumatologist to control the steroids, but that's just a regular office visit, not a whole hospital thing.  I won't have to see a surgeon.  This is obviously good news.  However, I would be lying if i said i wasn't a little nervous.  For one, I was specifically told not to cover the site where the chest tube was, which is no longer a gaping wound, but still, I know it was there.  Also, with no appointments and no visiting nurse, I'm pretty much on my own.  I have to determine if I'm sick or have some kind of infection (which is still a danger.)  Considering how long I let the agony go at the start of this whole thing, that could be very dangerous.  Hopefully, I'll be smarter should anything like that happen. (So, people, please tell me if I look like shit.)
As I ease back into a normal life now, because I guess I have to, I am forced to look back and wonder how I spent all this recovery time.  Basically, I spent a lot of time on the internets, accomplishing not very much.  I mean, I wasn't trying to change the world, just get through the days, but I suppose I could have worked a little harder at making use of my time.  Unfortunately, that's just where my life is at right now.  Honestly, I spent most of my time online when I wasn't recovering from a severe infection.  Now here we are, one month of summer left, and I think I'm going to try and accomplish something that doesn't have anything to do with the internet.  I have no idea what, but I'll know it when I see it.  And it will be cool, and make me feel good, and when it's over, I'll write all about it right here on my blog.
Oh, come on.  I didn;t say I was giving up.